A Cure for Heart Defects!

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

 

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year.  Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science.  And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

It’s not in my chart

REMEMBER: Grand Rounds hosted here on June 15! Entry guidelines are HERE

This post is not mine – I found it over at Life in the Fast Lane, a medical blog based in Australia. Also, in the original, the patient suffers from Crohn’s Disease. I’ve changed parts of it to reflect the thinking of someone living with a Congenital Heart Defect.

When you come into my hospital room, you need to know the facts of my life

that there is information not contained in my hospital chart

that I am a historian and a writer

that I wanted to teach when I graduated college

that I love life, beauty, travel, eating, Horatio Hornblower, Sherlock Holmes, the theater, movies, walking, my dog, and my parents

that I have been a member of a chronic illness group for four years

that I once thought I was the only one with a heart defect, or one of a very small number

that my girlfriend is someone just like me, because we automatically understand each other

When You come into my room, you need to know the losses of my life

that I was born with a defective heart and no one thought I would live this long

that I have been hospitalized more than a dozen times

that I am chronically ill, and am seeking healing, not cure

that I have to limit my sodium and keep track of how much I drink

that I can “fake it ’till I make it” but sometimes have no energy left at the end of the day

that I have a certain item of clothing I wear to every doctor’s appointment because I think it brings good luck

that I look up area hospitals before I travel… just in case

When You come into my room, you need to know my body

that I am afraid of medical procedures done at night …

I can’t sleep in a hospital, I often wake up crying

that I know when something just isn’t right, even if it isn’t recorded in my chart …

that I am on more than 10 pills each day

that I hate doctors who confer outside of my room; I worry that they are talking about me and the news is grim

that sometimes this body seems battered, old, vulnerable, tired … but still me

that I live by medication

that I live by technology

When You come into my room, you need to know my fears

that I am emotional … a fully functioning feeling person

that I am scared of the word “surgery”

that I once felt I could not breathe in recovery

that I have occasionally lost confidence in my body

that any new symptom scares me

that I am occasionally angry at life’s unfairness

that I worry about the future

that I am anxious about aging and how I will cope

that I long for one perfect day, only one symptom-free 24 hours

that there are times I want to give up

When You come into my room, you need to know my mind and my spirit

that I sometimes wonder “Why me?”

that I sometimes wonder what my life would be like if I were “normal”

That I sometimes wonder if I would be who I am if not for my bad heart

that I have faith, lose it, and regain it – all in a few moments

When You come into my room, you need to sustain my hope

You need to know that I believe love wins over hate; hope over despair; life over death

that I hope against hope

that I pray and believe prayer heals

that some days I am able to make meaning of suffering

that I am more gentle, more compassionate, better with dying, more loving, more sensitive, deeper in grief and in joy

When you come into my hospital room, promise me presence

Sit at my ‘mourning bench” if you are my physician

listen to me, talk truthfully to me

you need to know all this if you want to heal me

And always tell me the truth – unvarnished

because I know that I will never be cured

and support my hope

that tomorrow there may be new medicines and new surgeries

and that today you care deeply

that you will do your best

promise me a healing partnership

keep hope alive

it is all I have to fight with.

Amen, and Amen;

Welcome to the club

I read a lot of medical blogs every day looking for information to pass along to Funky Heart! readers, and when I found  StorytellERdoc he quickly became one of my favorites. There is no doubt about it, the doc can write. Today’s entry deals with children who have a Chronic Illness and their parents. StorytellERdoc has been there himself:

One of our amazing ER nurses, Kathy, the mother of a son with cystic fibrosis, said it best when Cole was first diagnosed. “Welcome to the ‘Parents-Of-A-Sick-Child Club’,” she whispered in my ear while hugging me. “It’s a club that no parent would ever want to belong to,” she continued, “but one that will change your life forever.”

No doubt about that. You wanted the 2 kids and a picket fence that is the dream of every parent. What you got was a full-scale war. You’ll have to learn skills that have absolutely nothing to do with your chosen career, take a crash course in Medicine, learn a foreign language (yes, “Doctor-talk” is a foreign language!) and unless you are lucky enough to live close to a major medical facility, you’ll have to become your own travel agent. But somehow you manage to dig your heels in and push back; you fight for what is yours and you hold on. That’s all you can do.

In the ER, when I meet the parents of an ill child, especially a prolonged, chronic illness, my utmost respect and compassion flows outward in tidal waves. I can only imagine the heartbreak and the struggles they have known in dealing with the fight for their child’s life, trying to obtain just a wee bit of normalcy.

It is a war that won’t be covered on the evening news, and can barely be put into words. Only a chosen few – members of The Club – understand. StorytellERdoc is a member of the club. Go, and read his account of one family’s  battle.

Chronic Babes and Funky Hearts

Jenni Prokopy, writer of the Chronic Babe blog (and the Chronic-Babe-in-charge herself!) as selected a Funky Heart post for the 12th edition of Patients for a Moment!

Patients for a Moment is a blog carnival dedicated to the experience of the patient. Click on over to Chronic Babe and read some of the best writing by the people who fight their illness on a personal level. And if you are a young lady living strong in spite of a chronic illness, look around the Chronic Babe site. In addition to being a Funky Heart, you very well could be a Chronic Babe also!

And don’t forget that submissions are still being accepted for the CHD Blog Carnival. The deadline is November 25 and the subject is “How a Heart Defect affects my life.”

Chloe’s been Chosen!

Patients for a Moment is being hosted by Kairol Rosenthal over at Everything Changes, and  she’s chosen A Beautiful Heart as an entry! Thank you, Kairol!

Patients for a Moment is the premier Blog Carnival focused on one of the most overlooked facets of medicine: the patient. There’s some great reading from various Chronic Illness bloggers this month, so scoot over to Kairol’s blog and read! Just leave a trail of breadcrumbs so you can find your way back here!

Even More Flu News!

It always seem to happen – I save up some good links about the H1N1 Swine Flu, go back through them and read them carefully, type an informative post… and as soon as I publish it, I find even more information that I think you could use.

It’s happened again, as usual. But instead of saving them until my next Flu Update, I decided to post them today. They’re pretty important links that you should  read, but also I have to see the doctor today. It’s my first time seeing this doctor, so I don’t know how long it will take.

I’m not seeing a new specialist – my usual doctor (my Primary Care Physician, for those of you who don’t live in the United States) recently retired, and this is my first appointment with my new doctor. Since my heart is *ahem* quite unusual, I think I’ll be there for a while!

But on to the flu… If you have a TamiFlu prescription for your child, be very careful. Doctors usually prescribe liquid medication in milliliters, but the TamiFlu box has a syringe that measures Milligrams. These measurements are not the same, and you could easily give too much or too little of the drug.

Revere over at Effect Measure (who has become one of my favorite Flubloggers) has a look at Intensive Care Unit (ICU) occupancy in the Southern Hemisphere and has some disturbing news: ICU units could get slammed. It’s not so much that we don’t have enough ICU beds to deal with a crisis, you have to have a staff with the required amount of medical training.

The second wave of H1N1 is sweeping the United States, brought on my close contact. As I’ve mentioned before, Influenza loves a crowd, and it is fall – school is back in session. Flu is even altering our worship habits: The Archdiocese of Winnipeg is taking steps to limit the spread of the Flu. No Holy Water for a while (but there is hand sanitizer) and shaking hands is discouraged. The public area is sanitized after each service, and even the Chalice gets wiped after every use. It feels strange, I’m sure, but I think God understands.

And finally, a post that I hope will reassure those who have questions about the vaccine. You really do need this immunization, especially if you have a Chronic Illness. I’ve had my seasonal flu shot, I’m on the lookout for the H1N1 shot, and I highly recommend that you do the same.

And now, off to the doctor’s office!

Finding your Niche

I was playing professional football for the Carolina Panthers when…

Surely you aren’t going to believe that – I’ve never played an organized game of football in my life. Professional level football is full of guys who weigh upwards of 275 pounds and hit hard; I’m a guy with a bad heart who weighs about 160 pounds. I’d get killed!

I’ll never play football. And I’ll never be able to work at a job that involves heavy physical labor – oh, I can work, in spurts. But I would have to take a lot of breaks to rest, way too many to justify anyone having me on their payroll. So I would have to find a job that doesn’t involve a lot of heavy lifting. A desk job would be fine, but I’d prefer something like my old museum job, since I love history so much. I’d have to find my niche.

That’s what a lot of people with Chronic Illness have to do – we have to find a job that may not be a perfect fit, but one that we can do and we can make our own. A lot of self esteem flows out of a person’s ability to find and hold a job, and it is thought that good self esteem can actually lead to better health. But finding that job may mean finding that space that only we can fill, and that may mean redefining our goals.

Working With Chronic Illness recently highlighted the career of Rocco Baldelli, a Major League Baseball player who broke into the major leagues with Tampa Bay. Rocco was something else – he contended for the Rookie of the Year award and was favorably compared to Joe DiMaggio. But after two good years, Rocco couldn’t stay healthy. And he was saying that even light workouts were making him exhausted. So when his contract ran out, Tampa Bay didn’t renew it, and Rocco looked like he was just another hotshot ballplayer that looked good in the minor leagues but couldn’t make it as a pro.

Doctors finally determined that he suffers from Channelopathy (Channel-WHAT? fans across the country said) a disease that affects how quickly you can recover from exertion. Baseball players play 162 games over six months, a lot of baseball… it looked like Rocco’s career was over for sure.

But then the Boston Red Sox picked him up. Certainly more than one baseball fan or official had to wonder if the Red Sox management had lost their minds; Rocco Baldelli couldn’t play a full season of baseball.

But they didn’t want him to play all the time. Boston was looking for a 4th outfielder – someone who can pinch hit when needed, or step in for one of the regular outfielders for a game or two. Fourth outfielders don’t play often, but when they do play, they have to produce.

Boston looked around, and there was Rocco – almost the Rookie of the Year, two great seasons under his belt, but no longer with Tampa Bay. They signed him! They know about Rocco’s illness, and how it limits his ability to play every day. But they aren’t asking him to play every day – just to stand in when needed. Boston had a niche that they needed someone to fill, and Rocco is the guy for the job – despite his limitations.

If you find yourself in Fenway Park or watching the Red Sox on TV, you just might see Rocco Baldelli. If you do, give him a cheer – he’s found his niche!

Swine Flu Update: Thursday, August 20

Swine Flu has yet another name.

Swine Flu wasn’t good enough; and apparently H1N1 makes the International Union of English Letters and Numbers nervous. An article in the New England Journal of Medicine recently gave it the name S-OIV, short for Swine Origin Influenza Virus. Gee… you wonder if we waste time trying to figure out what to call this thing, it might sneak up and make a bunch of people sick?

The Centers for Disease Control has issued its recommendations for those who should get the vaccine first, and those of us with a Chronic Illness are on the list. As soon as it becomes available, it would pay to get in line – the priority groups total about half of the US population. Mexico is already predicting a shortage of vaccines, at least at first.

H1N1 continues to spread, almost at will – the Costa Rican President has a case of it, along with three politicians from Ecuador. Fans at a Brazilian soccer match were recently forced to wear facemasks to attend a game, which brings to mind this photograph from our past.

There is some good news – the seasonal flu vaccine is going to be ready early. Since the Swine Flu and the “usual” flu strain that is going around are different, we’re going to have to be inoculated for both the regular flu and H1N1. Oh, boy, something else to look forward to. I’m not a big fan of needles – whenever I have a blood test and the tech asks my name and birthday, I always want to ask “Do you think I’d be letting you poke me if I didn’t have to?!?!” But someone, somewhere probably enjoys it just a little bit too much, so I never ask. They may tell me a few things that I’d rather not know!

Those People

Some things just **** you off.

Duncan Cross noted this on his blog, and somehow he didn’t go postal. And at first I was thinking that it couldn’t be true; somehow Duncan had misread, misinterpreted, or maybe was just having an officially certified 100% BAD DAY. So I clicked the link and checked it out for myself.

Thank goodness I don’t have any blood pressure problems.

There’s an “advice column” on Boston.com., the online presence of The Boston Globe. Seems fairly harmless; I mean, how many of us glance at Dear Abby while we’re reading the paper in the morning?

But the letter in the August 5th column torked me off – and a lot of other people, I bet. Here’s how it went:

My boyfriend has always had health problems, but a little over a year ago, things really got bad. There’s no need to go into the details, but suffice it to say, it isn’t going to go away, and it has impacted every aspect of our lives. Because it is often difficult for him to move around, we started going out less and less. Our home became less social as he didn’t like having people over as much. His interests narrowed, his mood soured (he’s being treated for depression). Our sex life dried up. I took it upon myself to do whatever I could to make life better for him; I have taken on more and more responsibilities; I physically take care of him; and I have been patient, accommodating and understanding as our lives changed…

…I feel isolated, stuck, and sad, and have been fighting the urge to flee. I think he may suspect my feelings, because he is reminding me more frequently how he loves me and couldn’t go on without me. But I just don’t know. On the one hand, I have all the responsibilities of the relationship, and none of the emotional or physical joy that should come with it. I don’t think he is either willing or capable of living beyond the lifestyle we currently live. I’m 24 and I am terrified at the prospect that this is it, that this is going to be my life. On the other hand, he’s still my best friend, and I love him and deeply care for him. He’s in pain, both physically and emotionally, and he needs me. If I left, it would break his heart, and when I think about the reality of that, it absolutely shakes me.

What should I do? It’s been over a year, and I feel I have tried everything, and things are not getting any better. Am I a horrible person to be thinking about leaving him?

Quite a mess is brewing – sick boyfriend isn’t doing so well and he is withdrawing into himself. In a way it is understandable, we’re all vain to some point. If we get an illness that really decimates us, it’s natural to think “I don’t want anyone to see me like this,” and retreat into ourselves. And that applies just as much to the person who gets blindsided by a bad case of the flu as it does to someone with a Chronic Illness whose health slowly deteriorates.

But this isn’t what irritates me. Our advice columnist answers in a flippant style that completely misses the mark:

You’re allowed to leave. You’re 24. You didn’t sign up for this. I fear the longer you stay, the worse it will be when you bolt.

He’s your friend. You owe it to him to be honest. Tell him you’re not up for this. You can’t commit to this life, at least not as a romantic partner. You can explain that part of your decision is about age and place in life. I truly believe it’s not just his illness. You want to discover more of the world. You want to get to know yourself better. That’s what unmarried people do at your age. You will feel like a jerk — but being a jerk is better than being a martyr.

This “advice” really grates on my nerves – You’re 24, it’s much too early for you to show any character! If the friend wants out, say so. And then she should grab her stuff and go. It will hurt for a little while, but it will be best in the long run… because the guy will know that she’ll cut and run at the first hint of trouble. At least if you’re up front with him he’ll know who isn’t on his side.

Duncan highlights the fact that the advice columnist and the young woman both miss important points: The young man is still working – a part of the letter that I did not highlight mentions the fact that both of them work – and he’s probably hanging on to his job by his fingernails in this terrible economy. He’s working when he really should be at home taking care of himself, and it is taking a lot out of him. Also if he’s taking medication for depression, his libido has probably dried up. He’s not in the mood, he’s exhausted, and although he’s working he knows that because of the economy or his health that job could vanish. It’s little wonder that things aren’t all Champagne and Roses right now.

But the best is yet to come! Our advice maven offers this gem:

Remind him of all of the other people in his life who care for him. Tell him to seek out as much support as possible. Dealing with a chronic is miserable. He needs to learn to cope without alienating everyone he loves.

A chronic. Not a person, but a chronic. A thing. With six words, she strips millions of people of their basic humanity and throws them into a nameless, faceless group. A group that makes you miserable when you have to deal with them.

Drop the word chronic and substitute nearly any word that identifies an ethnic or a social  group, and you’ll have a fight on your hands. Try using the word Italian, Jew, Republican, Democrat, Yankee, or Redneck in that sentence and people will start screaming. If you really want people to hate your guts, throw the N word in there.

But use the sentence as it is written and there is nary a peep. Apparently it’s still OK in certain circles to discriminate against those of us who are living our lives in spite of it all.

I’m not really upset at the female for wanting out of the situation, she’s young and probably doesn’t know any better. But our advice columnist – she has no compassion, no human decency, and I doubt she understands the inner strength that we sometimes have to draw from just to keep going. And she apparently doesn’t care.

After all, those people are just chronics.

Hearts aren’t White

Here’s an article abstract from a recent issue of the journal Circulation: Cardiovascular Quality and Outcomes that compares prenatal diagnosis of Congenital Heart Disease (CHD) with socioeconomic position, their level of insurance, and even their race. Race was not a direct factor, but socioeconomic position and insurance was… the better off you are, the better the chances of a CHD being picked up during a prenatal ultrasound.

Which brings me to a subject that I’ve been wanting to discuss for a while but never felt comfortable approaching: By far, most of the CHD Survivors I have had the honor of meeting are Caucasian. And I don’t mean just more than 50%, the number has to be close to 85% and possibly higher.

One of the biggest points of Health Care Reform, in my opinion, should be equalizing care. This probably falls under the umbrella of making sure everyone is covered, but I have never heard the point expressed as I see it: A heart defect, we know, strikes 1 out of every 125 live births. It doesn’t care if you are White, Black, Asian, Native American,  rich or poor… if you are number 125, you’re it. And your parents better be able to generate a lot of resources because your treatment is going to be expensive. Not just right after birth, but throughout your lifetime.

We do need to control healthcare costs and we do need to make sure everyone is covered, and we need to make sure that everyone has a chance to get the medical care they need, no matter if they are born with a disease or acquire it later in life. Because hearts don’t have a race.

And every heart deserves to live a lifetime.